Home Is (bleeping) Burning

I heard an interview a while back with Dan Marshall, who wrote a memoir about caring for his terminally ill parents. Yes, you read that right: parents, plural. Both of Marshall’s parents had a terminal disease: his mom’s lymphoma and his dad’s ALS.

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The book, Home is (bleeping) Burning, tells the story of the Marshall family, who (except for their copious and creative cussing) sound like a regular American family living their lives and doing their thing until their regular lives are upended by health crises. Here’s how Amazon describes it:

For the Marshalls, laughter is the best medicine. Especially when combined with alcohol, pain pills, excessive cursing, sexual escapades, actual medicine, and more alcohol.

Meet Dan Marshall. 25, good job, great girlfriend, and living the dream life in sunny Los Angeles without a care in the world. Until his mother calls. And he ignores it, as you usually do when Mom calls. Then she calls again. And again.

Dan thought things were going great at home. But it turns out his mom’s cancer, which she had battled throughout his childhood with tenacity and a mouth foul enough to make a sailor blush, is back. And to add insult to injury, his loving father has been diagnosed with ALS.

Sayonara L.A., Dan is headed home to Salt Lake City, Utah.

Never has there been a more reluctant family reunion: His older sister is resentful, having stayed closer to home to bear the brunt of their mother’s illness. His younger brother comes to lend a hand, giving up a journalism career and evenings cruising Chicago gay bars. His next younger sister, a sullen teenager, is a rebel with a cause. And his baby sister – through it all – can only think about her beloved dance troop. Dan returns to shouting matches at the dinner table, old flames knocking at the door, and a speech device programmed to help his father communicate that is as crude as the rest of them. But they put their petty differences aside and form Team Terminal, battling their parents’ illnesses as best they can, when not otherwise distracted by the chaos that follows them wherever they go. Not even the family cats escape unscathed.

As Dan steps into his role as caregiver, wheelchair wrangler, and sibling referee, he watches pieces of his previous life slip away, and comes to realize that the further you stretch the ties that bind, the tighter they hold you together.

In the interview, Marshall read passages from his book, and just so you know, the language and some of the topics in Home Is (bleeping) Burning may be less than pleasant for some readers. (Does it mean I’m weird/crude/uncouth/all of the above because I really relate to and enjoy the mom, who is the most prolific with her cussing?). Also note that the Marshalls live in Salt Lake City but are not Mormon, and there are some non-PC comments made about their Mormon neighbors. Perhaps this book is not for the faint of heart. But then again, neither are terminal illnesses or recurrences or sick parents. As Greg Marshall (the author’s brother) so eloquently put it: “For the Marshalls, life is a contest to see who is _____-est. Bravest. Weirdest. Grossest. We take our lack of filter to superlative heights.”

Perhaps my own lack of filter attracted me to the Marshalls’ story. It could also be because I too cared for a sick parent. I too experienced the strange role-reversal that comes with caring for a parent. I write often about the terrible yet honorable practice of becoming the authority figure and advocate for the person who, until their illness took hold, was the authority figure and the advocate for me. I write often about how my mom’s death affected me, and continues to affect me. That’s why my ears perked up when I heard about Dan Marshall and his memoir.

This passage got me. Hit me hard. Reminded me of my own sweet mama (without the cussing). This passage describes the family discussion on Christmas day. The topic is how the family will handle Mom’s lymphoma recurrence and Dad’s new ALS diagnosis. Dan described his mom’s stance upon learning her cancer had come back:

“She wasn’t just going to roll over and let cancer f*** her to death. She was going to fight and fight hard. And she suggested we all do the same.”

Indeed. May we all do the same.

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tentacles

I read two articles this week that have stuck with me. Both are about cancer, and living with it. One might think that being four years out from the cancer “journey” that I would have “put it behind me,” but as those of us in Cancerland know, that is a misnomer. As the distance between us and cancer becomes greater, the instances of cancer smacking us in the face become fewer, but they are never gone. The opportunities to be bitch-slapped by the beast are plentiful. We reside in the “middle stage” of the cancer “journey,” as author Susan Gubar says.

Gubar is an English professor and ovarian-cancer club member. Her writing cuts to the chase and speaks to the very essence of my soul, a trait I greatly admire (and sometimes covet). To wit:

“But for some of us, there is a middle stage in this journey. Because of advances in cancer research and the efforts of dedicated oncologists, a large population today deals with disease kept in abeyance. The cancer has returned and has been controlled, but it will never go away completely. Like me, these people cope with cancer that is treatable for some unforeseeable amount of time. Chronic cancer means you will die from it — unless you are first hit by the proverbial bus — but not now, not necessarily soon.

The word “chronic” resides between the category of cured and the category of terminal. It refers to disease that is not spreading, malignancy that can be arrested but not eradicated. At times, the term may seem incommensurate with repetitive and arduous regimens aimed at an (eventually) fatal disease. For unlike diabetes or asthma, cancer does not respond predictably to treatment.”

Cancer does not respond predictably to treatment.

True dat. The unpredictability of the beast gives it tentacles with potential to bitch-slap us at any time. Those tentacles may float benignly under the surface, or they may reach out and grab us sight-unseen.

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Gubar writes of us Cancerland residents: “No matter how grateful these patients are for their continuing existence, it requires not the spurt of sprinters but the stamina and sometimes the loneliness of long distance runners. When repetitive and arduous regimens weary the spirit, it may be impossible to value the preciousness of life,  to visualize one’s harmony with the universe, to attain loving kindness, to stay positive, to greet each day as a prized gift.”

This, my friends, sums up the conundrum those of us in Cancerland face: Yes, I am happy to be alive. But dammit, living under the cloud of unpredictability is hard. It’s stressful. It’s lonely. It’s scary. It’s rife with bitch-slaps.

Article #2 is by Lani Horn, who blogs about her cancer “journey” here. She wrote a piece that was picked up by Time magazine online about the movie The Fault in Our Stars and how it represents cancer patients. Having read the book but not seen the movie yet, I was intrigued by her take on how the movie would portray the reality of cancer patients. Or, as she more deftly puts it,”Is cancer simply a storytelling device — shorthand for eliciting sympathy and turning up the heat on the issues in a character’s life — or do the filmmakers take it seriously as a situation to explore? This question sorts the cancersploitation from real cancer art.”

Horn explains that people who watch movies that deal with cancer are in two distinct categories: “outsiders, wanting to understand an experience beyond our own, or insiders, coming to see our own lives reflected.”

She and I are in the latter group. Unfortunately. Horn makes it very clear that “the world looks different after you have spent time pinned to the mat by death. The gaps between reality and representation are no longer theoretical. They are contentious.”

Oh, but to reside in the land of theoretical gaps between reality and representation. To never worry about being bitch-slapped by a tentacle.

Horn asks: “So what does it mean to use cancer as a backdrop to a story? To be sure, a prolonged or terminal cancer experience is a crucible of one’s character, as well as the characters of those around you. The fractures in our relationships break or heal under the strain of mortal threat. Cancer is an economical dramatic device.”

Yes, cancer certainly is dramatic. And unpredictable. And bitch-slappy.


The “Caged Bird” sings no more

Maya Angelou is dead. The world has lost a phenomenal woman. mayaangelou

 

Many tributes will be recited, many glasses will be raised, and we will mourn this phenomenal woman. Much will be said and memories will be traded about this phenomenal woman. Lovers of well-crafted poems and admirers of carefully honed words will re-read the vast catalog of work produced by this phenomenal woman.

Maya Angelou’s dear friend Oprah Winfrey offered this statement: “What stands out to me most about Maya Angelou is not what she has done or written or spoken, it’s how she lived her life. She moved through the world with unshakeable calm, confidence and a fierce grace.”

Fierce grace. Only a phenomenal woman can move in that way.

Although her pedigree was short, her accomplishments were long: she was San Francisco’s first female and first black streetcar conductor. She was a singer, a dancer, a novelist, a succesful single mom, an actress, a civil rights activist, a poet, a teacher, a playwright, a university professor, and a holder of 30 honorary doctoral degrees. She was nominated for a Pulitzer and a Tony and three Grammys. She was awarded the Presidential Medal of Freedom. She was a bad-ass. 

This phenomenal woman spoke from the heart and did not mince words. Her friend James Baldwin paid her a high compliment when he said that she could hold both her liquor and her positions. 

Two of Maya Angelou’s quotes ran through my head often while I was enduring the shit-storm that is cancer: “We may encounter many defeats, but we must not be defeated.” And “You may not control all the events that happen to you, but you can decide not to be reduced by them.” She came to know the truth in those profound statements from the earliest days, when she was raped by her mother’s boyfriend at age 7. Yes, you read that right: age 7. Seven. An incident she described as “a breaking and entering when even the senses are torn apart.” Yet this phenomenal woman would not be broken by it. Instead, she wrote I Know Why the Caged Bird Sings, which won the National Book Award in 1970 and was on the NYT bestseller list for two years. “The caged bird sings with a fearful trill, of things unknown but longed for still.”

Despite her early, unimaginable hardship, this phenomenal woman lived to teach and to give. She said, “I’ve learned that you shouldn’t go through life with a catcher’s mitt on both hands; you need to be able to throw something back.”

I for one am immeasurably grateful for all she threw back.

She refused to be discouraged by the many obstacles standing in the way of a young black woman in the South in the early days of civil rights. In her poem “Still I Rise,” she challenged and persevered:

Does my sassiness upset you?

Why are you beset with gloom?

‘Cause I walk like I’ve got oil wells

Pumping in my living room.

Just like moons and like suns,

With the certainty of tides,

Just like hopes springing high,

Still I’ll Rise.

You may shoot me with your words,

You may cut me with your eyes,

You may kill me with your hatefulness,

But still, like air, I’ll rise.

My all-time favorite Maya Angelou poem is “Phenomenal Woman.” It’s too good to excerpt, so here it is, in its entirety. If I ruled the world, I would make it required reading for every girl and women on this earth, in hopes of it curing insecurity and self-doubt. I would require every male on this earth to memorize this poem, in hopes of eradicating crimes against women, both emotional and physical.

Phenomenal Woman
Pretty women wonder where my secret lies.
I’m not cute or built to suit a fashion model’s size
But when I start to tell them,
They think I’m telling lies.
I say,
It’s in the reach of my arms,
The span of my hips,
The stride of my step,
The curl of my lips.
I’m a woman
Phenomenally.
Phenomenal woman,
That’s me.
I walk into a room
Just as cool as you please,
And to a man,
The fellows stand or
Fall down on their knees.
Then they swarm around me,
A hive of honey bees.
I say,
It’s the fire in my eyes,
And the flash of my teeth,
The swing in my waist,
And the joy in my feet.
I’m a woman
Phenomenally.
Phenomenal woman,
That’s me.

Men themselves have wondered

What they see in me.

They try so much
But they can’t touch
My inner mystery.
When I try to show them,
They say they still can’t see.
I say,
It’s in the arch of my back,
The sun of my smile,
The ride of my breasts,
The grace of my style.
I’m a woman
Phenomenally.
Phenomenal woman,
That’s me.

Now you understand

Just why my head’s not bowed.
I don’t shout or jump about
Or have to talk real loud.
When you see me passing,
It ought to make you proud.
I say,
It’s in the click of my heels,
The bend of my hair,
the palm of my hand,
The need for my care.
’Cause I’m a woman
Phenomenally.
Phenomenal woman,
That’s me.

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Trapping the jumping beans

“Sometimes I have to let go and mother myself, kiss the hurts away. Tell myself that sometimes bad things just happen. But writing about it helps a lot, it scrapes it out of the dark corner, holds it up to the light and somehow heals the wound. It borders on miraculous.”

I have no idea who wrote these words. If any of y’all know, will you tell me? This quote spoke to me, though, at some point, because I wrote it down, and today as I cleared off my desk I found it. Scrawled on a scrap of paper and placed in my “I’ll get to this later” pile, the quote has lingered, waiting for me to get to it. How very patient.

I’m pretty sure I didn’t write it (although I wish I had). Perhaps it spoke to me because of the idea of having to mother myself. Being a motherless daughter, I don’t often think about mothering myself, and yet I do. Making myself go to bed when instead I want to stay up all night reading my current favorite book. Being diligent about pulling that load of shirts out of the dryer and hanging them up instead of letting them sit indefinitely in a wrinkled heap. Wiping up the spills on the stove top now, not later, before they’ve hardened into an indeterminate glob of laminated goo.

In the early days of navigating life without my sweet mama, I actively avoided any mothering that might come my way. That hole in my heart was too new, too raw to allow anyone else to even attempt to approximate any of the things my mom did. Seven years later, I still eschew any overt mothering. Somewhere along the way, though, I must have started mothering myself a bit. I certainly don’t hold out any hope that the hurts can really be kissed away, although I do tell myself often that bad things just happen. Telling myself that doesn’t help my innate desire to question, to wonder about the reason, or to pick things apart in a futile effort to figure them out. Sometimes it just is.

Writing about the things, whether the bad things or the confounding things, does help. Perhaps that’s the line that most spoke to me in the above quote. Perhaps that’s the reason I jotted the quote on a scrap of paper and put it in the pile on my desk. I’m a big believer in writing as healing, which I why I sit in front of my computer, keyboard clacking away as the words fill the screen. For me, just getting the words out of my head and the thoughts onto the screen is therapeutic.

Writing about the good stuff and the funny stuff is important, but writing about the bad stuff is even more so. Like the mothering I inevitably do for myself, writing about the bad stuff helps make it better. Somehow it purges the toxic stuff from my soul and helps filter the insomnia-inducing worries that blanket me after the lights go out and the house is quiet. No matter how much distance I try to put between myself and the cancer “experience,” those worries return. Sometimes it’s the fleeting thoughts before a routine oncology visit, and sometimes it’s a more concrete feeling. Sometimes it’s a visceral assault, like the smell of the hospital that fills my senses when I’m just visiting. Sometimes it’s a random trigger that takes me back to the heat of the battle. Regardless of the form or the impetus, the worries remain. Hence the need to write. Hence the need to read the stories of others who have walked this path. Ray Bradbury explained it perfectly:

“If you stuff yourself full of poems, essays, plays, stories, novels, films, comic strips, magazines, and music, you automatically explode every morning like Old Faithful. I have never had a dry spell in my life, mainly because I feed myself well, to the point of bursting. I wake early and hear my morning voices leaping around in my head like jumping beans. I get out of bed to trap them before they escape.”

Knowing that I can drown out the insomnia-inducing worries with the “morning voices” is sublime. It borders on miraculous.

 


Gratitude

Marie at Journeying Beyond Breast Cancer has issued a challenge. I can’t resist a challenge, so I’m in. Her idea? Take a photo each day of something for which I’m grateful and share it online.

Today I’m grateful for Mo Willems. He’s a children’s book author who writes a charming series called Elephant & Piggie. We’ve read this series a million times, and with titles like There Is a Bird on Your Head and I’m Going to Surprise My Friend, these books never get old. Even now that my favorite girl has way outgrown Mo’s books, I still smile when I think of Gerald & Piggie. As I recover from Wednesday’s knee surgery, I thought of Gerald & Piggie, and instead of Today I Will Fly, for me it’s Today I Will Walk. 

48 hours is about all I can take of the forced sedentary healing, so Today I Will Walk. Stiff-legged and slow, and probably a bit of shuffling, too, but Today I Will Walk.

My favorite girl and I were lucky enough to meet Mo Willems several years ago when he came to Blue Willow Bookshop

He read from his latest book, The Pigeon Wants a Puppy, and took questions from the audience. 

After his presentation, we stood in a very long line to have Mo to sign Macy’s books. He was funny and charming and everything I expect a kids’ book author to be. My favorite girl chattered endlessly about ideas she had for Mo’s books. She had a ton of story ideas in her 5-year-old brain, and I suspect it made perfect sense to her that they could collaborate. So when Mo asked Macy if she had any questions for him as he signed her books, she said, “What’s your phone number?” Sweet Mo was a bit taken aback, and when Macy explained that she has some ideas, he realized he didn’t need to panic, we weren’t a couple of crazy stalkers.

Meeting Mo and being in his presence and seeing how he interacted with all the kids was a super cool experience. Today I’m grateful for Mo Willems. And Today I Will Walk!

 

 


Beach reads

 

 

It’s day 12 of our vacation, and I’ve plowed through several really good books. I love to read. Getting lost in someone else’s story has always intrigued me, but never so much as becoming a member of the illustrious Pink Ribbon Club. Stealing away from the drudgery of this disease with a good book has saved me innumerable times. Rather than falling into a well of despair from a lengthy hospital stay in the hell that is a post-mastectomy infection, I would flip open my Kindle and fall into a great read.

Perhaps my Love of reading is genetic: my sweet mama taught 8th grade English and was an avid reader. She and my dad always had at least one book going, and the bookcase in their bedroom that spanned one entire wall next to their bed would fill me with visions of its collapse one night, burying my slumbering parents in musty hardbacks, best sellers, and classics. Thankfully that never happened.

At home, I don’t read as much as I would like. It’s a cruel dichotomy:  I want to find out what happens next in the story, yet my innate nature has me bustling around getting things done instead.  Not so on the beach: the things that need to get done are sitting on the beach, soaking up the sun, listening to the surf, and reading. That’s a very good to-do list.

My summer reading began with Gold by Chris Cleave. Awesome read. It was especially nice leading up to the Olympics, as it’s the story of two British cyclists training for the London games. They’re friends and rivals in their sport and their lives. Cleave is a masterful writer who crafts characters who seem quite real.

After becoming hooked on Cleave’s, I moved on to his two other books, Incendiary and Little Bee.  Both are as good as Gold was.  The former tells the story of a woman whose husband and son are killed in a terrorist bombing of a London soccer stadium. The latter gained cult status yet I shied away from it because the subject matter seemed depressing: a young Nigerian refugee flees her home amidst violence stemming from turf wars over oil fields. A chance encounter with a British couple on holiday in her village provided a landing place as she fled. Chaos ensues, lives are changed, and a mesmerizing story gains its rightful place in literary history. My only complaint is that Cleave has no more books as yet for me to devour. Get cracking, Chris!

After the gravity of Little Bee’s saga, I sought something a bit lighter and went with the buzz surrounding The Unlikely Pilgrimage of Harold Fry. Harold is walking some 500 miles, quite unexpectedly, to visit his former coworker, Queenie Hennessey, who is dying of cancer. Harold is convinced that his journey on foot will save her. Crazy? Perhaps. Intriguing? Definitely.

I absolutely devoured another buzz-filled book, The Light Between Oceans. This story of a remote lighthouse keeper off the wild coast of Australia and his infertile wife is absolutely captivating. The answer to their problems and prayers apparently appears one day when a rowboat washes ashore, containing a dead man and a howling infant. No ID, no witnesses, no problem. I won’t give away any more because you just need to read it yourself.

I have 7 more days of vacation and plan to keep on reading.


You can’t run from trouble…

It’s a quiet Sunday morning, and I’m alone with my thoughts. I’m up earlier than I might have chosen, thanks to one hungry little piggy. After a Friday night of interrupted sleep and a Saturday full of tennis, errands, swimming laps and a late dinner with a favorite cousin, I may well have stayed in bed a while. However, savoring a slumbering house amidst hte sunlight pouring in through the trees and hearing the sweet sound of birdsong while sipping a cup of strong coffee is better than sleeping in.

Plus it gives me time to read my book, Shantaram, which I’ve been dying to dive into but haven’t found the time. It’s been likened to Cutting for Stone, one of my all-time most favorite books ever. If it’s half as good as CFS, I’ll be one happy reader.

Quick synopsis of Shantaram: Mr Lindsay, our protagonist, has escaped from an Australian prison and fled to Bombay. There he meets Prabaker, a native of the slums who renames Lindsay “Lin” and becomes his always-smiling, eternally joyful guide to the big city. Lin falls for Karla, a mysterious woman with sea-green eyes, and pursues her amidst the backdrop of a lively bar called Leopold’s. Lin is “a magnet for trouble, a soldier of fortune, and a picaresque hero” who delves into the black-market world of false documents. I’m not very far into the 944 pages of adventure, but am intrigued.

As I settled in to read this fine morning, I came across an especially well-written passage, which brought me up short. Lin is talking to his new friend Didier in the bar about some of the more unsavory patrons among them. In an effort to avoid being overheard by the bad guys, Didier was “speaking out of the corner of his mouth, like a prisoner under the eyes of the wardens.”

A nice metaphor, for sure, but it gets better:

“In Australian prisons, that whispering technique is known as side-valving. The expression spoke itself clearly in my mind and, together with Didier’s mannerism, the words put me back in a prison cell. I could smell the cheap disinfectant, hear the metal hiss of the keys, and feel the sweating stone under my fingertips. Flashbacks are common to ex-prisoners, cops, soldiers, ambulance drivers, fire fighters, and others who see and experience trauma. Sometimes the flashback is so sudden, and so inappropriate to the surrounding circumstance, that the only sane reaction is foolish, uncontrollable laughter.”

I had a flashback myself last week, and while it didn’t lead me to foolish, uncontrollable laughter, it almost set off a full-blown PTSD attack. I was rushing out the door to get one kid to school and head to the gym, my usual weekday routine. I’m a stickler for taking my own cup to the gym instead of using the styrofoam ones provided. As if our bulging landfills need another cup tossed on the heap. In my haste to get out the door, I grabbed a straw for my cup and scooted out into the garage and into the car. It wasn’t until I was into my workout and gulping water like a crazy person that I realized the new batch of straws I’d bought were bendy straws.

Big deal, right? Bendy straws can be useful, especially if one is reclining while drinking. Or if, say, one is hospitalized for countless days after a post-mastectomy infection. Yessiree, folks, a simple, innocent bendy straw sent me straight from my normal routine of a morning workout directly to the days of being captive in a hospital bed, held hostage by a nasty mycobacterium. Just as Lin was instantly transported from a bar in Bombay to the hated Australian prison cell, I was back in the hospital bed, raging with fever and sick, sick, sick while a nasty bug set up shop under my newly implanted tissue expander. A one-way ticket to Crazy Town in hand, I took the express train down (bad) memory lane.

I wasn’t even thinking about infections, hospitals, antibiotics, or breast cancer when the flashback struck, but I suppose that’s the nature of flashbacks. Triggered by sights, smells, or sounds or, in my case, straws, flashbacks take over and not only interrupt our present business but also disrupt the rest of the day with their nasty after-effects. Interesting how bad memories are just as powerful as good ones. Unlike the good memories, which fill us with warmth and comfort, bad memories suffuse our souls with fear, anxiety, and panic.

The bendy straw that triggered this particular flashback went straight into the trash, and I tried my best to go about my day like a normal person. Finish the workout, chit-chat with my fellow gym rats, reserve a tennis court on the way out, get in the car, drive to the grocery store, fill my cart, unload the loot, take a shower, pick up kids, supervise homework, prepare dinner, clean the kitchen. From the outside, I looked like a normal person doing everyday tasks, but inside I was anything but normal and was once again a cancer patient, fighting my way through uncertainty, confusion, and balls-out fear. In that moment, cancer made me its bitch, and there wasn’t a single thing I could do about it. The only thing keeping me from a total meltdown was knowing that this flashback would pass, that the terror brought on by a simple bendy straw was fleeting.

But as I talked myself off the ledge with soothing reminders that this too shall pass, I know just as certainly that while the terror will pass, it will also return. Again and again, this flashback will haunt me. Perhaps each time it becomes less rapacious, less capable of felling me in one swift motion, but it will return.

“You can’t run away from trouble.  There ain’t no place that far.” ~Uncle Remus